Villi Absent

[bincongo]

I took a peak at Scott's book "Cereal Killer's" on Amazon and it looks good but it started me thinking. I looked back at my endoscopy results and it says my villi are complete absent. I am 62 years old and of course I don't know how long I have had Celiac but I was diagnosed 2 months ago. So my question is, what are my chances of recovery. I have my age against me and the fact that the villi are "completely absent." I am gluten free and I do have good days and less bloating but some days I think I feel worse.

[Skylark]

Probably, if you're really good with the diet. It will take some time to come back from severe damage though and you're early in a fairly long process. There are studies of people with Marsh 3 or 4 damage. Some recover by two years, and even more in the study had recovered well by five years. A few didn't have a perfect recovery but they get a LOT better. There is no way to know how well the people who didn't recover fully were really following the diet.

I really hope you start having more and more "better" days!

[psawyer]

I had extreme villous atrophy when I was diagnosed at 46, ten years ago. The GI doctor said my intestinal lining was smooth. He did not cite a Marsh value, but from what I now know, it was Marsh 4.

My recovery took time, and it was several months before I felt "normal" again. A follow-up endoscopy five years later found complete recovery. Biopsies taken were negative for damage, and blood work was also negative.

This disease can be beaten in almost every case, by strict adherence to the gluten-free diet.

[burdee]

I took a peak at Scott's book "Cereal Killer's" on Amazon and it looks good but it started me thinking. I looked back at my endoscopy results and it says my villi are complete absent. I am 62 years old and of course I don't know how long I have had Celiac but I was diagnosed 2 months ago. So my question is, what are my chances of recovery. I have my age against me and the fact that the villi are "completely absent." I am gluten free and I do have good days and less bloating but some days I think I feel worse.

If you had undiagnosed celiac disease for many years, you may be vulnerable to other autoimmune diseases as well as gastrointestinal problems. I'm 63 and was diagnosed with celiac disease at age 56, after years of gastro symptoms which were misdiagnosed as 'gastritis' or 'ibs. Despite abstaining from gluten, I continued to have gastro symptoms. So I did ELISA allergy (blood) tests and discovered I had 6 additional IgG and IgA mediated food allergies. Even after abstaining from all those allergens, I still had gastro symptoms. Then during the past 4 years I was diagnosed with and treated for 8 different intestinal infections (5 bacteria, 2 parasites, and candida).

After that period I found a naturopath who wanted to determine why I was so vulnerable to chronic infections (gastro, respiratory and bladder). Recent blood tests revealed low white blood count (due to years of fighting infections and/or low thyroid), low MCHC (anemia), low normal T4 and higher than normal TSH (hypothyroidism possible due to Hashimoto's thyroiditis caused by years of undiagnosed celiac damage). Hopefully treating hypothyroiditis will increase my resistance to infections. Then I can just focus on avoiding my food allergens.

[bincongo]

If you had undiagnosed celiac disease for many years, you may be vulnerable to other autoimmune diseases as well as gastrointestinal problems. I'm 63 and was diagnosed with celiac disease at age 56, after years of gastro symptoms which were misdiagnosed as 'gastritis' or 'ibs. Despite abstaining from gluten, I continued to have gastro symptoms. So I did ELISA allergy (blood) tests and discovered I had 6 additional IgG and IgA mediated food allergies. Even after abstaining from all those allergens, I still had gastro symptoms. Then during the past 4 years I was diagnosed with and treated for 8 different intestinal infections (5 bacteria, 2 parasites, and candida).

After that period I found a naturopath who wanted to determine why I was so vulnerable to chronic infections (gastro, respiratory and bladder). Recent blood tests revealed low white blood count (due to years of fighting infections and/or low thyroid), low MCHC (anemia), low normal T4 and higher than normal TSH (hypothyroidism possible due to Hashimoto's thyroiditis caused by years of undiagnosed celiac damage). Hopefully treating hypothyroiditis will increase my resistance to infections. Then I can just focus on avoiding my food allergens.

Yesterday I had my routine blood work. Last year it turned up that I was hypothyroid and I have been on medication. This year with the help of the people on this site I called my doctor and asked to add several more tests, Free T-3, Free T-4, Vit. B12,B6,B1 and D plus Tissure Transglutaminase and Endomysial antibodies. I hope it will be a start to see how my body is overall. I did not think to add allergy testing.

It has not been a good week for me, off and on abdominal pain for 6 days now. It is hard for me to know if it was one thing that started it or something I am doing every day. I am gluten free to the best of my knowledge and I am very careful. I use Lactaid milk and yesterday I had gluten free soy sauce. I know I may have to eliminate them. Is it easier to take ELSIA testing than to try and find out dietary causes? I have Lactaid milk everyday in my coffee and I am not bothered by it all the time, the same with soy sauce. I just can't see a conection yet with anything that I eat. The only conection I see is that coffee makes it worse but I am certain it is not the cause. My colonoscopy done after my endoscopy this year showed up diverticulosis but I don't think that would cause my "leaky gut" symptoms. I do have a follow up doctor's appointment in 2 weeks and I will ask lots of questions but to be honest I think people on this site know more than my doctor. I do like my doctor and she is willing to work with me.

[burdee]

Yesterday I had my routine blood work. Last year it turned up that I was hypothyroid and I have been on medication. This year with the help of the people on this site I called my doctor and asked to add several more tests, Free T-3, Free T-4, Vit. B12,B6,B1 and D plus Tissure Transglutaminase and Endomysial antibodies. I hope it will be a start to see how my body is overall. I did not think to add allergy testing.

Is it easier to take ELSIA testing than to try and find out dietary causes? I have Lactaid milk everyday in my coffee and I am not bothered by it all the time, the same with soy sauce. I just can't see a conection yet with anything that I eat. The only conection I see is that coffee makes it worse but I am certain it is not the cause.

You might also want to add TSH to see whether how your meds have changed those scores.

Some members of this board may disagree, but I think ELISA tests are more effective for determining delayed reaction food allergies (IgG and IgA mediated antibodies) than elimination diets or skin tests (which only eliminate IgE or immediate reaction allergies). Guessing which foods are safe and which foods cause problems is difficult because (as you mentioned) delayed reactions make seeing a connection between foods and symptoms more difficult. Also people can develop allergies to almost any food. There are no 'safe' foods. So they would have to start with only water, eat only one food each day, wait a few days for reactions, and then move onto other foods one at a time. That's very difficult.

I would advise you to keep eating all your normal foods before doing the ELISA and carefully interpret the results. My naturopath advised me to consider the general pattern of my reaction results. If I reacted to many foods with low scores, but only a couple of foods with higher scores, I should consider the high scores my 'allergies'. Fortunately I had already discovered gluten, dairy and soy through Enterolab stool tests. So my outstanding high moderate and high reactive foods on ELISA tests were eggs, cane sugar, vanilla and nutmeg. Since those tests I've accidentally eaten each of those foods and observed painful gastrointestinal reactions (except cane sugar which causes tachycardia and nausea).

[Skylark]

I take it you're eating gluten-free soy sauce? Soy sauce with wheat would be the source of your problems. Otherwise, yes many celiacs feel better off milk entirely for a time.

[bincongo]

I take it you're eating gluten-free soy sauce? Soy sauce with wheat would be the source of your problems. Otherwise, yes many celiacs feel better off milk entirely for a time.

Yes it was gluten free soy sauce. This morning I tryed my coffee without any milk and still had a reaction. I use instant coffee that is on the gluten free list so I am pretty sure it is the caffeine that is one of my problems. I had a muffin with it that was made gluten free in my kitchen.

[rdunbar]

It's called the small intestine, but it's actually not that small. I've heard the surface area of the small intestine is the same size as a tennis court. They take one small sample for a biopsy; sure it can give you a general idea or picture of what's going on, but I think it's worth taking with a grain of salt,

maybe they took the sample from a part of your intestine that was more damaged than others? It's really just an approximation at best,

give yourself a chance to heal, and you will; I've spent plenty of time thinking " what if I don't get better""?", so I understand

[Skylark]

Yes it was gluten free soy sauce. This morning I tryed my coffee without any milk and still had a reaction. I use instant coffee that is on the gluten free list so I am pretty sure it is the caffeine that is one of my problems. I had a muffin with it that was made gluten free in my kitchen.

Bummer. It's not flavored coffee is it? Some instant and flavored coffees have gluten. People around here do best with coffee buying beans and grinding their own.

[bincongo]

You might also want to add TSH to see whether how your meds have changed those scores.

Some members of this board may disagree, but I think ELISA tests are more effective for determining delayed reaction food allergies (IgG and IgA mediated antibodies) than elimination diets or skin tests (which only eliminate IgE or immediate reaction allergies). Guessing which foods are safe and which foods cause problems is difficult because (as you mentioned) delayed reactions make seeing a connection between foods and symptoms more difficult. Also people can develop allergies to almost any food. There are no 'safe' foods. So they would have to start with only water, eat only one food each day, wait a few days for reactions, and then move onto other foods one at a time. That's very difficult.

I would advise you to keep eating all your normal foods before doing the ELISA and carefully interpret the results. My naturopath advised me to consider the general pattern of my reaction results. If I reacted to many foods with low scores, but only a couple of foods with higher scores, I should consider the high scores my 'allergies'. Fortunately I had already discovered gluten, dairy and soy through Enterolab stool tests. So my outstanding high moderate and high reactive foods on ELISA tests were eggs, cane sugar, vanilla and nutmeg. Since those tests I've accidentally eaten each of those foods and observed painful gastrointestinal reactions (except cane sugar which causes tachycardia and nausea).

[bincongo]

Sorry I am still new to this and sometimes press the wrong key to reply. It would seem that taking blood tests for allergies would be easier than an elimination diet. If I can I will wait until my appointment to see how the other test results turn out. I am sure my doctor included TSH and it will be interesting to see if I am absorbing the thyroid medicine differently since I sleep very little at night.

It is like this huge puzzle that just keeps getting bigger. Today I had a salad with gluten/lactose free dressing and water to drink and it didn't set well either. I am beginning to think any food is more than my intestines can handle. I am trying to eat yogurt every other day. People have mentioned probiotic's or magnesium and if so which one's should I use?

[burdee]

Sorry I am still new to this and sometimes press the wrong key to reply. It would seem that taking blood tests for allergies would be easier than an elimination diet. If I can I will wait until my appointment to see how the other test results turn out. I am sure my doctor included TSH and it will be interesting to see if I am absorbing the thyroid medicine differently since I sleep very little at night.

It is like this huge puzzle that just keeps getting bigger. Today I had a salad with gluten/lactose free dressing and water to drink and it didn't set well either. I am beginning to think any food is more than my intestines can handle. I am trying to eat yogurt every other day. People have mentioned probiotic's or magnesium and if so which one's should I use?

If you have reactions to 'lactose free' dressing, you may actually have casein (milk protein) allergy, rather than lactose (milk sugar) intolerance.

If you're not sleeping well, your thyroid supplement dose may be too high now. I was told to get blood tests for thyroid function every 6-8 weeks while I'm on medication to monitor, as well as watch for symptoms of hyperthyroidism, caused by too much thyroid drug.

If you have more constipation than diarrhea or take calcium, you may need magnesium supplement. Bloating after meals, frequent gastrointestinal infections and irregularity (either diarrhea or constipation) not caused by food allergies or intolerances, may mean you need more probiotics. If your good bacteria are really depleted yogurt won't really give you enough probiotics. A good probiotic is freeze dried with at least 10-50 billion live cells per capsule.

[bincongo]

Bummer. It's not flavored coffee is it? Some instant and flavored coffees have gluten. People around here do best with coffee buying beans and grinding their own.

Plain old Taster's Choice, even says gluten free on the label.

[bincongo]

If you have reactions to 'lactose free' dressing, you may actually have casein (milk protein) allergy, rather than lactose (milk sugar) intolerance.

If you're not sleeping well, your thyroid supplement dose may be too high now. I was told to get blood tests for thyroid function every 6-8 weeks while I'm on medication to monitor, as well as watch for symptoms of hyperthyroidism, caused by too much thyroid drug.

If you have more constipation than diarrhea or take calcium, you may need magnesium supplement. Bloating after meals, frequent gastrointestinal infections and irregularity (either diarrhea or constipation) not caused by food allergies or intolerances, may mean you need more probiotics. If your good bacteria are really depleted yogurt won't really give you enough probiotics. A good probiotic is freeze dried with at least 10-50 billion live cells per capsule.

So much good information. I decided to go lactose free after having a reaction to Ben's and Jerry's chocolate/ cappuccino ice cream about a month ago.

I have constipation all the time with leaky gut and gas pain. The constipation is with me all the time but sometimes I can go days without pain. I do take calcium. I am not sure I feel I have bad bloating but I do have a lot of pain that comes in waves.

I am going to be out of town next week so I do appreciate getting some answers before I go. I hope to not feel sick the whole time.